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Tuesday, August 13, 2013

For those of us who suffer from an invisible illness/disability such as chronic pain, fibromyalgia, lupus, or any of the myriad other conditions which are not readily visible, I believe the one thing we want above all is acceptance. If I told you that I had cancer, you wouldn't tell me to suck it up. If my leg had been amputated, you certainly wouldn't tell me that walking a mile a day would make me feel better. You would accept my condition without question. But because my disability isn't visible to the world, it is considered less than other disabilities.

Most of the time, I use a cane when I am out and about running errands. While I don't always need it, I have found that my cane acts as a visible symbol of my disability. I often have to use one of the motorized carts provided at the larger chain stores. If I sit down on the cart and plunk my cane into the basket, no one looks twice at me. However, if I haven't brought my cane for some reason, I have been subjected to dirty looks and rude comments. People aren't readily willing to accept that some disabilities aren't in your face.

I have said this before, but it is difficult to understand chronic pain when you haven't experienced it yourself. That being said, I have never had cancer, but I am empathetic to those who have. I have sympathy for the sufferer, and I would do anything within my power to make things easier for them. I would accept the things they are going through without judgement. This is what we want for ourselves.

To be honest with you I am tired of smiling and nodding at people when they tell me that their Aunt Mildred had fibromyalgia, and she ate nothing but black beans for the rest of her life and it cured her. What I would really like to say is that you're Aunt Mildred must have had terrible flatulence, and I would rather hurt, but thank you for your concern. Sometimes, I get tired of being nice.

I believe that we all have a duty to educate those around us about these invisible conditions. Of course, there are those around who will not believe what we have to say, no matter how much proof we can hand them. It is very frustrating to be constantly belittled and ignored, but we can't quit. Like the old saying says, the squeaky wheel gets the grease, and the more we squeak, eventually someone is going to listen.

If nothing else, I would like to see a return to common courtesy. If you see someone struggling to carry something, offer to help them. If you see someone in a wheelchair having trouble opening a door, offer to help them. If you notice someone who seems sad or depressed or stressed, just offer them a kind word and a smile. If we want others to be accepting of us, we must be accepting of those around us.

Monday, August 12, 2013

As we get older, I think it is normal that we begin to contemplate the passage of time. I will turn 51 in a little over a month, and for the first time, I am actually beginning to feel my age emotionally. Because of my health issues, I have felt my age physically for quite a while. However, mentally and emotionally, I have never felt that old. I still listen to rock music and I can openly talk to my sons about everything. In fact, one of my dearest friends in the entire world is in her twenties, and the age difference just doesn't exist between the two of us.

However, I am starting to feel my age, and I think the primary reason for this is the fact that my children are growing up. My oldest son will soon be twenty one. Chris has a job and his own apartment, and he tells me that he has met a girl who makes him think about settling down and actually growing up. I think to myself that he is far too young to be thinking along these lines, however, I was engaged to my first husband when I was his age. I would like to think that I could help him to learn from my experience, but sometimes, we have to let go and let out children make their own mistakes, as well as experience their own successes.

Also, in a little over a week, I will be taking my middle son to college for the first time. I am so proud of him, and I am excited for him to begin this next chapter of his life. Matt is incredibly smart and will be majoring in chemistry, with plans to attend medical school. Because of his hard work in high school, he will be a sophomore before evening completing his first year of college. And, as happy as I am for him, this is a very bittersweet time for me. I'm mentally not ready to let him go. This is my issue to deal with, and I will not let him know that this is how I feel.

My baby is growing up, too, and there is nothing I can do to stop it, not that I would. My little boy is 16 years old now, and has his driver's permit. After teaching his two older brothers to drive, it isn't too stressful, but it is hard to believe that this little boy is already old enough to be driving. Jack is a junior in high school, and I am already feeling the pull of his leaving home as well. Granted, he has two years of high school left, but by the time they are a junior, they are leaning towards their own future.

Soon, it will just be my husband, two cats, one dog, and me. The thought of Dale and I being alone frightens me quite a bit. As most of you know, because of my husband's disability, he is very limited in the things he can do. All of the chores that involve leaving the house fall to me. If Dale has a doctor's appointment, lifting his wheelchair into and out of the car falls to me. If one of the boys is home, they will handle this for me, but soon, there won't be a boy to call on for help. I am certainly not getting younger and I my body continues to betray me.

I do believe in the power of prayer, and I have seen how well it works. And because of this I pray everyday for my family, my friends, and myself. I believe that the answers will come, and that we will be fine in the future. Now I just have to learn to accept the fact that I am getting older and life is going to change. And I know in my heart that the changes will be wonderful!

Tuesday, August 6, 2013

Looking inward is rarely an easy thing to do. If you are anything like me, there is always a fear that you will find things within yourself that you would rather not face; things within yourself that you know you will you not like about yourself. That being said, I have felt a compulsion to look into those dark recesses to try and determine what is going on with me right now. There are things that I don't like, and there are things that I feel helpless to repair.

The first thing that I find is that I am carrying around a lot of resentment right now. I don't like that feel this way, but at the moment, I feel helpless to let go of this resentment. As most of you know, my husband and I are both disabled. His disability has left him confined to a wheelchair, and it is a progressive disease with no cure. He does what he can to help out around the house, and I will say that he does a lot. He has days when he is unable to do anything, and I understand that and try not to hold it against him. If you notice, I said that I TRY not to hold it against him. Unfortunately, I am not always successful in that, hence the resentment.

Because of my fibro, and the problems with my back, there are days when I deal with excruciating pain. There are days when the only thing I feel like doing is lying in my bed or huddling in my recliner, praying that the pain will soon pass. Sometimes, the pain lingers for days and weeks, with little or no relief, despite what I do. According to my doctors, and the Social Security Administration, I am completely disabled, to the point that working isn't a possibility for me. But to look at me, you wouldn't know that I am disabled. My disability is invisible. Despite this fact, I have no choice but to keep going, irregardless of how bad I feel.

My husband is no longer able to drive. Because of this, all of the errand running falls on my shoulders. Granted, my son Matt has his drivers license now, and he will run some errands for me. The mother in me, however, feels guilty about expecting him to do things for me. He is an 18 year old boy, experiencing his last summer before college. Matt has a lovely girlfriend and friends that he wants to hang out with before leaving for school in a couple of weeks. I don't want to take that time away from him by expecting him to handle my business for me. And so, I try to limit the things he does for me.

I shouldn't resent doing these things for my family. I feel guilty when I do finally say I can't do anything else. I feel guilty when I look at Matt and ask him to go to the grocery story for me, or take Jack to work. I feel guilty when I have to look at one of my boys and tell them that they can't do something because I don't know how I will get down the back steps to the car, and back up the steps when I get home. I feel guilty when I tell the boys to eat a sandwich for dinner, instead of cooking a meal for them. I also resent all of them when they seem not to care how badly I am hurting when they want me to do something for them.

I wish that I had the answers to make this resentment just go away. I wish that I didn't feel this way. I wish that I had never developed fibro and crippling back problems. I wish that I could be the mother that I always dreamed of being. But, there is an old saying that goes, "If wishes were horses, then beggars might ride." My wishes do me no good, because I see no way of changing the situation that I am in. Hence, the resentment and guilt that I live with every single day.

Sunday, August 4, 2013

To those of you who have been faithful, long time readers of my little blog, I owe you an apology. It has been such a long time since I've written anything, and I don't really have a good excuse for letting something that has meant so much to me, and hopefully to you, fall by the wayside. I can try to explain by saying that things have been very busy, but that excuse doesn't really work. Things have been busy in my life before, and I still found time to write. I can say that I haven't felt well enough to write, but that doesn't work either, because even when I have felt worse than this, I have found time to write. I could also say that my insomnia has made writing difficult, but once again, it doesn't work, because my insomnia is no worse than it has been since I was 10 years old and first developed it.

I guess the best reason that I can offer for not writing is depression. Lately, I have felt a deep depression that hasn't let up. There is no real reason for it, but then those of you who suffer from clinical depression know that there is rarely a reason for falling into the black hole of depression. I just have felt that nothing I had to say would be worth reading, even though, logically, I knew that people enjoyed reading the things that I have written in the past. Unfortunately, logic and depression rarely walk hand in hand with one another.

I know that I need to talk to my doctor about prescribing me an antidepressant again. I have never been ashamed about the fact that I suffer from depression. It runs in my family like blue eyes or brown hair. But for some reason that I don't understand, I haven't wanted to admit to anyone that the black hole had crept up on me again. I have always told others that depression is no different from any other physical ailment. I think the term "mental illness" is so misleading, considering the fact that depression, like other illnesses, springs from a physical cause. I have a brain chemistry that just doesn't work. And I know from experience that medication helps to realign that chemistry so that I don't suffer from the effects. So why haven't I just told my doctor that I need help right now?

Unfortunately, I don't have the answer to that question right now. I suppose that the depression itself may hold the answer. However, the next time that I see my doctor, I am going to be honest with both him and myself, and ask for help. I'm not being fair to myself by not seeking help for something that can be so easily treated. There is no shame in asking for help when you truly need it. I have told this to many people, and it is time that I take my own advice. That being said, I also promise to be more diligent in writing again. I got so much out of writing my blog, probably more than I gave to others, so I am going to make a concerted effort to keep up with it again. For those of you who have been faithful readers, I hope that you will once again join my on my journey.